Friendship

As parents, we want our children to thrive physically, emotionally and socially. We want them to be accepted and embraced for the wonderful, quirky little humans they are. We want them to have friends, good friends.

Over the last two years, I've had the pleasure of watching AJ thrive in middle school with an incredible friend group. He's found his tribe of friends who share common interest, laugh hard together, definitely fit together in their own wonderfully weird way and have each other's backs. It's been such a joy to get to know these boys and to see AJ have the friendships he's developed. And, boy, is he a good friend, thoughtful, kind and empathetic.

With Teddy, it's always a bit of a mystery what happens outside the realm of our supervision. We know he's had playdates with our friend's kids and that he's a social boy who believes everyone is his friend. He's had two friends from the bus and school through the years who have done play dates, and he's certainly enjoyed those. But this last year has been incredibly special in terms of friendship.

At his after-school programming, he became friends with another younger boy. Since I don't do after-programming pickup most days, I was quite confused at the library when all of the sudden a woman asked me if Teddy was Teddy. I said yes, and she told her son that Teddy was at the library. This little boy screamed Teddy's name, ran across the library and scooped him into a hug all the while Teddy was grinning and excited to see him. I told the lady I needed a bit of help, and she clarified her son and Teddy were friends from this programming. It was just cool to see that relationship.

The other relationship that has blossomed into a full-on bromance is Teddy and his friend Mikey. What started as classmates and friends at school has evolved into all sorts of play dates this summer, playing baseball on the same team, shared dinners and all sorts of fun. No matter how much time these two spend together, it is never enough! Mikey is constantly asking what Teddy is doing, when he'll see Teddy and if Teddy can come play. And Teddy is always searching for more of Mikey, asking in his own way to include him in activities and literally bouncing up and down with joy to see him every time. 

Baseball besties made this season even more fun!

It was interesting hearing from Mike's parents about their introduction to Teddy. They said Mikey constantly talked about Teddy, how much fun they had at school, how they sit together, and nonstop chatter about Teddy. But they never got details exactly on what they did together or what they talked about, so they weren't quite sure what to expect. They reached out to us through a letter sent home on the bus with Teddy how they've heard all about Teddy and would we like to get together. I was so tempted to be sassy and say we'd never heard a word about Mikey but figured that wasn't a good way to start a friendship. You can imagine that when they learned Teddy is non-speaking that clarified for them why they never heard what the boys discussed. 

I'm so glad they reached out because the two boys are such a joy to watch together, and they make each other so darn happy. Mikey talks enough for both of them, but they understand each other with Teddy's signs and gestures and simply get along. 

For a child like Teddy, it's incredibly cool to see this type of friendship develop. I'm here for all the best friend moments! (No, really, I still have to supervise Teddy. But dang, this is mostly joyful to supervise.)

Happy Belated Birthday!

Two weeks ago we celebrated Teddy's 12th birthday. While 12 may not seem like a milestone, every birthday for Teddy feels like a milestone because of the medical literature that existed when we got his diagnosis when he was 2.5 years old.

At that time, there was so little known about his disorder (at the time called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1, now known as PIGN-CDG) that Google returned less than 10 results. And tucked into those results was the life expectancy of 3 years.    

Imagine reading that when your child is only 6 months away from turning 3, wondering why he has this invisible expiration date that you didn't know existed, contemplating how your relatively healthy child could be dead in months. 

Needless to say, the medical literature was wrong. While his disorder does unfortunately take away far too many of our children far too early from complications from seizures, respiratory illnesses and a world that is too hard for those sweet ones with medically fragile bodies, others are surviving and thriving well into their 30s and likely beyond. Given that this disorder was only discovered in 2011 and that there's so few known cases, that's why we aren't aware of older individuals, not because they don't exist.

So that's why birthdays feel monumental. At times they feel challenging because it's hard to know what to get Teddy some years. Other years it's a reminder of another year of age, yet developmentally not being where his peers are. We never know quite what emotions will arise with birthdays. 

But this was a sweet year, a day filled with a bunch of family and friends. A day spent playing with all his people, loving that more than any of his gifts, though he did great opening his gifts. A year with lots of ice cream gift cards, so he and his best friend can keep visiting Baskin Robbins like it's going out of style. 

Oh, and there was dancing and a giant dinosaur balloon to ride ... until it died. But it's probably an OK thing that it died because Teddy was about to make all the adults ride it. 

Birthday boy with his toys. 

Miracle League - 2026 Season

When you have a child with disabilities, you discover an entire world that you didn't know existed. I'm so grateful we are living in the era we are in terms of access to services, resources and opportunities to enjoy childhood for Teddy. There's so much that exists now that I don't believe existed during my childhood. 

One of the amazing opportunities is Miracle League, which provides kids the chance to play baseball on an accessible field partnered with amazing volunteer buddies who support their needs. Year after year, Teddy has had great buddies, and this year Sam did amazing with him. From the first game, Sam was comfortable interacting with Teddy, guiding him where they needed to go and supporting him to bat and run the bases. It is so cool as parents to see these young volunteers shine with how they interact with our children, and Teddy lit up when he saw Sam each week.

Sam + Teddy = All smiles!

This season was extra fun because Teddy has become best friends with Mikey through school this year. As parents of a non-verbal child, it took us a while to realize Teddy had this best friend, but we eventually figured it out. These two boys cannot get enough of each other. It doesn't matter if they spend hours together during the day, they're constantly wanting to hang out again with each other. 

So they were on the same baseball team, which meant every Tuesday we got to hang out together at the ball field. Teddy loved having his friend with him to bat next to him, play together in the outfield, get ice cream before or after the games, share supper before and ride together to games. Their friendship made this season extra sweet for all of us.

These two are something else together!

We're lucky that Teddy has such amazing family and friends. Every game came with a cheering section, complete with grandparents, great aunts and uncles and our adopted kids or some combination thereof. It's truly a blessing to have family and friends who show up for us to share in the ordinary moments of summer that really are the extraordinary moments of life. 

World CDG Day Recapt

It's been a month since World CDG Day, and I wanted to share how incredible the day was. I had every intention of creating a collage of all the support for Teddy and others with green shirts but simply never got there. But every picture shared, every shirt worn, added a bit of awareness and reminded our family how much love there is for Teddy and our entire family.

It was a day of worldwide connection with our other PIGN families through the blog post sharing a number of our children, along with a video showcasing even more. It's incredible to see how large our group has grown since we first found it in December of 2015 when there were about 5 families.

What made my heart nearly burst with pride, though, was AJ's advocacy that day. He spent the month prior coordinating with everyone from the principal to all the 7th grade science teachers to Teddy's teacher to arrange presentations for all 7th graders during their science classes. He was able to share all about CDG, talk about what it's like for Teddy and him and promote the research and fundraising project he's doing for the research. 

AJ is developing really good speaking skills for his age.

AJ did phenomenal! He presented 6 times, spending most of the class period with his presentation and the really good QA sessions that followed. The principal even joined for his first presentation! It was really neat to hear the thoughtful and insightful (and random) questions from 7th graders. 

One surprise in his presentation was that he added a slide about bullying. AJ was brave enough to share his personal experiences in feeling hurt and sad when others laugh at Teddy's vocalizations in the hallway or make comments, even if they don't intend to be mean. I thought this was incredibly brave of him.

At lunch AJ and Teddy teamed up to hand out CDG cookies to all the 7th graders. Teddy did amazing in handing out cookies with AJ's support. One of the coolest things was that a couple boys came up, and assumed they were coming for cookies. I told them they'd have to wait until their table was dismissed. They said, "We're just coming to say hi to Teddy like AJ encouraged us to do." They smiled, waved and said hi before heading back to their table. 

Teddy loved his job of handing out cookies.

It was such a neat experience, and AJ is already excited about possibly presenting to all the 7th graders again next year as they will be Teddy's peers.

It was really special to be a part of this day.

Improvisation

This past weekend I noticed Teddy got a bit creative to entertain himself while we were driving. He took the string of his lacing toy, inserted one end into the charging port of his phone and inserted the other end into his ear. He created his own ear buds for his phone, a modern spin on the old-school telephone game.

This kid cracks me up.

Really creative approach to make your own headphones.

Summer Bucket List

It was a year ago that I was in tears, struggling with the transition for Teddy from the elementary school where he'd been for 6 years (5 with the same teacher) to a middle school that none of his elementary friends would attend. I knew it would be fine, but it was hard to say goodbye, especially with Sigrid there to fill us in on the daily shenanigans.

While it was a bit bumpy to get the school year started, I can confidently say that Teddy is rocking middle school with the support of his team. He has developed some great friendships that go beyond the classroom, and there's so much excitement to see his friends at after-school activities. He's made friends with his peers, and, of course, he's befriended his paras, teacher, therapists, nurses, and more. 

It's clear how much his team has learned about Teddy this past year - and how well our communication system is working with a non-speaking child - to see his summer bucket list. They absolutely nailed it!

This is perfectly Teddy!

Aside from missing a pontoon boat ride, this list is Teddy. It's a little thing, a bucket list activity that so many kids do this time of year, that captures the big, important things ... that his team knows him, understands him and cares for him.

Just Another Wednesday

It's story time! And when I say story, I'm not talking a fictional episode. I'm talking a real-life, Ted-venture. (That's our word for adventures with Ted, which is used frequently in our house, mostly to talk about community outings.) It's a bit long, so get comfy and settle in.

I will preface this story with my appreciation that folks were all acting with Teddy's best interests and safety in mind, and I very much appreciate that. I will also add that I thought the best Teddy story I'd have this week was the fact that he disappeared at his friend's house and was found in the bathtub fully clothed with the water running, but it's not. 

This story starts with me attending a quarterly board meeting for my non-profit organization, with me as the official recordkeeper. In case it's not clear, to take accurate minutes for a meeting, it's important to be in the meeting. Ten minutes into this meeting, I notice "Bus Company" calling me. 

That is not a call I can miss, so I step out to take the call. In talking with dispatch, I hear that no one is at our home. So, they are calling to check if Teddy can be left alone. If you're brand new here, you might not realize the answer to this question is either uncontrollable laughter or something that sounds a lot like "Duck no!" I opt for the more professional route, tell them he absolutely cannot be left on his own and that I need a few minutes to figure out why his childcare provider isn't there. 

I immediately call Dave and ask him to head home immediately because he's only 30 minutes away. I then call the supervisor for our brand new ABA provider who started the week prior. Thankfully she answers. I share that no one is at our home, which is confusing to her because she had just texted Teddy's staff member who was supposed to be at our house. She said she'd try to call the staff member and get back to me. She called back after not being able to reach the staff member and said she'd head right to our house to get Teddy off the bus in about 10 minutes. 

While I'm talking to her, the bus dispatcher calls me back again to report that AJ has arrived home. He asked whether Teddy could be left with the 13-year-old brother. My answer was unfortunately not but that we had another adult human who would be there in 10 minutes. He acknowledged this.

I returned to my meeting because it's impossible to take minutes when you're not there, knowing that I had a solution arriving in 10 minutes. When AJ text me while I was in my meeting, something about an authorized adult, I told him Dave was on his way home. I also missed a call from our next-door neighbor but wasn't about to miss more of the meeting when I had everything as fixed as possible.

And ... pause. Now that you've heard my version of events, let's transition to what really transpired in our cul de sac (as best as we can determine). 

Teddy's new ABA therapist arrived at our house and was present when Teddy's bus arrived. There was a brief exchange during which she confirmed she was Teddy's service provider. (For context, she was with me last week when Teddy got off the bus, and Teddy promptly grabbed her and pulled her into the house.) Teddy's bus driver would not release Teddy to her care as she wasn't Teddy's parent.

When AJ's bus arrived, and I didn't authorize for AJ to be responsible for Teddy, they moved Teddy to AJ's bus. This was because AJ was the last kid on his route, while Teddy's bus still had a handful of kids to return to their homes. (Keep in mind, my calls with dispatch never mentioned the fact that our childcare provider was there, that there was an adult present, etc. The calls simply were asking if Teddy could be left alone or in the care of his brother.)

So, now both Teddy and AJ are stuck on AJ's bus, which is sitting in the end of our cul de sac. We have Teddy's ABA therapist waiting, and then her supervisor arrives. The person we're paying to support Teddy is in our driveway/road while Teddy is stuck on a bus. I will say, though, that if you're going to make Teddy wait anywhere, a bus with his friends and then an empty giant bus are the absolute best places to make him wait. 

Just a boy who loves buses.

About 30 minutes after I got the first call asking if Teddy could be left alone, Dave arrives home. He's obviously focused on getting in the house, getting debrief, etc. So while he notices the 2 cars for the caregivers and obviously the bus, he simply wonders what happened to the bus that it broke down and was stuck in front of the neighbor's driveway. He heads into the house and is puzzled to find an empty house ... until both kids are released and head inside followed by the 2 caregivers.

And, that my friends, is apparently just another Wednesday night in our household. 

Oh, epilogue: After talking with the bus company this morning, there is absolutely no policy or list of approved or authorized people. They only need an adult visible in the window at the home to make sure the kid is not left alone for young kids or those with disabilities. We did confirm that any adult who is in our driveway there, stating they're there for Teddy, is able to take Teddy. 

Don't worry ... I'm sure that will lead to the next saga being the story of the time Teddy decided to work for UPS or Amazon.